Tag Archives: mental age

Caution – this is just my opinion – you may or may not agree, may be offended or not – but I own it. You are allowed to comment, I won’t censor if you do not agree with me or if you hurt my feelings – I may tell you but I won’t censor your opinion.

When a person writes an “OPINION” essay and it is published in a public online magazine it becomes open for discussion. Some people who write “opinion” pieces become upset or hurt at comments that may be generated from readers who express their own opinion or have questions for the author of the original “OPINION” piece.

Isn’t one objective of an “OPINION” essay to gather comments and hear what others may have to say? It may be an opportunity to learn from others who may have a different opinion or to learn a different perspective from those who share the same opinion.

This issue is one that I have faced over and over again with regards to advocating for people with intellectual and developmental disabilities. Apparently there is a “right” opinion and if your opinion is different than that “right” opinion your comments may be deleted and you may be banned from further discussion.

This censorship only causes harm to those who the so-called advocates are supposedly advocating for. Without an open discussion regarding various viewpoints people will be isolated and unable to work through problems that may exist. Ignoring barriers to quality care and efforts to help support people in having a meaningful life only only makes the situation worse. Unless you live in a fantasy world.

One would think that being a magazine devoted to neurodiversity and open to “publishing opinions from many corners of the neurodiversity community” that censorship and blocking participation from advocates in discussions is counter to the mission. Apparently, only those neurodiverse in the “right” way are allowed to comment and exchange opinions or answer questions from others.

Saskia Davis, published her thoughts about the article above on NOS Magazine. There was a follow-up comment to which Saskia wanted to reply and it was then that she realized that her post had disappeared and her reply was not able to be posted either.

I offered to publish Saskia’s responses on this site because I think they are worthy of being read and understood. The first comment can be read on Developmental Disabilities Exchange. The follow up comment is below in this post.

“NOS Magazine is a news and commentary source for thought and analysis about neurodiversity culture and representation. Expect long form journalism, reviews of pop culture, and more. NOS stands for ‘Not Otherwise Specified,’ a tongue-in-cheek reference to when a condition does not strictly fit the diagnostic criteria, or is in some way out of the ordinary.

Opinions: Not Otherwise Specified

Stories: Not Otherwise Specified

Perspectives: Not Otherwise Specified”

NOS Magazine is a publication for the neurodiversity community. As such, people who identify as a part of the neurodiversity community and/or who are neurodivergent in some fashion will be given publication preference in order to ensure that this publication is a voice of the community. We recognize and respect self-diagnosis as valid and do not have a standard of who is “disabled enough” to count.

Opinion

Published pieces are not necessarily the opinion of NOS Magazine. We are open to publishing opinions from many corners of the neurodiversity community.

I wrote:
“These are helpful suggestions. How would you help a person understand the level of constant, total care that is required for the support of someone who lacks the capacity to make safe decisions, lacks verbal ability to express what is wrong, and what s/he wants, but has enough, almost understandable vocabulary to frequently repeat the same few phrases, can’t safely mobilize herself anywhere, is absolutely distractable, and doesn’t care to focus on anything except neckties or hats or cars, will choke due to putting food in her or his mouth before swallowing the last bite if allowed to self feed, except that is impossible because s/he can’t load her own spoon, but can hold a glass and will choke if not dissuaded from laughing during drinking, while self-feeding, gets food all over her/his face, body and clothes, laughs with delight when something or someone falls on the floor and finds it great fun to empty surfaces of their contents to see them fall, or someone who can carry on a delightful, if limited conversation but, who, if asked questions or when another person wants his food or when he can’t have food from someone else’s plate, will throw a 20 minute tantrum just like those that two year olds throw, (only this person is 6 feet tall and weighs 160 pounds) hollering, throwing himself on the floor, writhing, kicking screaming, hitting, biting, and who has been unable to learn to tie his shoes or put them on the correct feet and who remains incontinent at the age of 21 despite many patient years of family members and caregivers’ attempts to help him achieve continence. In few enough words so that the reader or listener will stay engaged to understand the other points you are trying to make, how do you give a picture of such a person that allows another to understand the intensive level of care and careful planning for support that is needed and the struggles the person endures in order to make progress? Thanks in advance for your suggestions.”

The title of this post is a quote from Sara Luterman, editor of NOS Magazine in answer to my question regarding removal of my own posts.

Posting as a follow up to my previous post. Apparently the editor of NOS Magazine did not approve of the comments that I and another advocate posted. The comments have been deleted. I have not received an answer from the editor regarding the reason for deletion.

In trying to describe situations and characteristics we often use similes and metaphors to
help those who are not familiar with jargon understand the situation. When using these
figures of speech, we are in no way belittling the person or saying that person is any less or more than anyone else. These figures of speech are extremely common and are used
throughout all types of writing and speech.
Maybe this is part of the problem with trying to describe a person. When saying that a
“person acts like a toddler ” we are using a simile – it is not saying that person is a toddler at all. It is describing that particular behavior at that particular moment or situation. In the case of my son, his behavior or understanding may not be typical for a 24-year-old in that particular situation.
One could also say that “he is a toddler” which is a metaphor. The simple definition of a
metaphor is that a metaphor states that one thing IS another thing but the statement is not literal – it is just figurative. Many may misinterpret this as the speaker actually saying this is true when in the fact the speaker was using a metaphor.
In the issues of trying to describe the support needs (be it physical, intellectual, behavioral or other) we often need to use similes to help others who are unfamiliar with that person or situation be able to grasp the magnitude of the need. Again, in no way does this figure of speech demean the person being spoken about but can help those understand the level of supports that may be needed to help that person be successful.
One other example of this is referring to a person with progeria as having the body like an old person. The person with progeria is a child but their bodies age prematurely and they have many health issues that are typically seen in the geriatric population. I wonder if people with progeria are offended if they are refered to as having the body of an old person?
Using similes and metaphors as figures of speech is a common and needed practice to help people understand others. We all have reference ideas in our heads about various things.
I’m sorry that people may not understand this issue but that is how the English language
works – it’s not the only confusing thing about this language

Motive asymmetry – the belief that one groups motives are driven by love, care and affiliation and the rivals are motivated by the exact opposite. This term is generally referred to with regards to political conflict but I see fully activated in the issue of advocacy for those with intellectual and developmental disabilities.

It feels to me that motive asymmetry is at play with regards to trained self-advocates and parents/guardians/healthcare professionals/case managers/disability advocates when any topic related to care, support, employment, inclusion, residential settings and community environment are discussed.

As a parent/guardian/disability advocate, this concept is very clear to me since I have been told by many trained self-advocates that guardians are only self-serving. This is truly not my perspective at all but it is attributed to me since I am a guardian. One effective tool used to help bridge this conflict is to meet in person. Once you know the person, views and ideas may change. It is only by meeting people and working together as people, rather adhering to inflexible ideologies, that we can break down these silos and make progress.

Ivanova Smith has written an article in NOS Magazine regarding the issue of using “mental age” as a description for people who happen to live with an intellectual and developmental disability. She states “We need to educate medical professionals that there are better and more respectful way to explain the needs of people with Intellectual/developmental disabilities. Difficulty doing specific tasks isn’t the same thing as being an actual child.”

I have never seen this description used to state that an adult with IDD is a child – they are adults who have a variety of support needs in many areas of life skills. Using labels and descriptive terms for various ranks, steps or skill levels are used in all types of employment, school, sports and athletics, and hobbies. One must pass through step 1 to get to step 2. This is a natural progression. One need not necessarily master the step but at least have a passing effort before one is able to proceed or progress. There could be many reasons for a rapid or slow progression through these levels.
People do not excel in all areas of life and do not need to be an expert in everything they attempt to have enjoyment and meaning from it. Also, people may “stall out” at one step and many years later may revisit and then gain more skills. This is not set in stone as it is a fluid process and there is always learning and progress occurring as people experience life. This progression is also true with developmental, emotional and maturity stages. It is not “good” or “bad” but just is.

I often hear that people do not like labels – but labels help us to learn and navigate life in so many ways. Think for instance of working in trades – there are labels applied to levels of skill development – apprentice, journeyman, master. One is not a better person than another by having a different label but has a different skill set. These labels help us, who may not be familiar with the work to be done, who we might want to seek out for consultation. Labels are not inherently bad but can be extremely useful in many situations.
I am asking for your input into how you, as a trained self-advocate, differentiate between people who may need an extreme amount of support to manage the daily activities of living versus someone who may only need some occasional guidance with specific areas? How do you, as a trained self-advocate, differentiate between someone who is unable to utilize public transportation and needs to be driven everywhere in a private vehicle versus someone who can navigate the city independently on public buses?
Or maybe you do not see the need to differentiate – if not, why not?

Please contact me Ivanova – I would love to meet with you in person.

Thank you – Cheryl Felak

Have you ever heard the phrase “that person has the mind of a five year old In an adult body?” It is something many adults with intellectual disabilities, like me, have to deal with. For years, medical professionals have told parents of newly diagnosed Intellectually disabled people that they would mentally be children for their entire lives.…

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